Abstract

Information technology has the potential to transform healthcare and eradicate many of the inequities seen in the area. However, the use of electronic means to process sensitive health data poses significant risks. Electronic health records have been designed to be more secure than traditional paper records, but there have been notable cases where data has been lost, stolen, or viewed by unauthorised persons. Misuse of health information technology can result in severe violations of human rights. In particular, the right to privacy can be eroded by inappropriate protections, which still exist in some health systems. This chapter describes the rights framework in healthcare, analyses legal provisions for protection of health data, considers why such protections are necessary, outlines examples of rights violations, and proposes future directions.

Healthcare: A Human Right?

Whether healthcare is a human right has long been debated. Madden (2002) notes that such claims have either been to a “right to health” or a “right to healthcare”. One of the earliest such references was made in the preamble to the 1946 Constitution of the World Health Organisation (WHO) which unequivocally states: “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being” (World Health Organization, 1949).The WHO definition of health is comprehensive: “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

Two years later, the Universal Declaration of Human Rights was published. Article 25.1 states: “everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing and medical care and necessary social services” (United Nations, 1949). This envisages a right to health as part of a socio-economic aspiration rather than a more quantifiable right to a particular standard of care or health status.

One of the most recently ratified instruments is the Charter of Fundamental Rights of the European Union. When the Treaty of Lisbon was signed in December 2009, the Charter became binding on EU states. It also begins by looking at health mainly from a socio-economic perspective, stating that “every worker has the right to working conditions which respect his or her health” (European Parliament & European Commission, 2001). However Article 35 goes on to say: “Everyone has the right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices. A high level of human health protection shall be ensured in the definition and implementation of all Union policies and activities.”

The wording emphasises the importance of preventive healthcare, and seems to suggest that there is no recognised right to health, but rather a right to access to healthcare.